Borderline personality therapy is scarce, costly

Menu Courey, a swimmer on full scholarship at the University of Missouri, had borderline personality disorder and was desperate for help in 2011. The wait-list for free care at the Centre for Addiction and Mental Health in Toronto was one year, so her parents paid $44,000 for 28 days of in-patient treatment at a U.S. facility. Three days before she was discharged, Menu Courey swallowed 100 headache pills. She died two days later.

By:Liam CaseyStaff Reporter, Published on Tue May 29 2012

When Sasha Menu Courey was suicidal last summer, suffering from the debilitating emotional swings of borderline personality disorder, she had two choices for comprehensive help.

An intensive, free program at the Centre for Addiction and Mental Health, where she would receive dialectical behaviour therapy, proven to work wonders with the disorder she had. But she would have to wait for a year.

Or she could pay $44,000 to spend 28 days at McLean Hospital in Boston, a psychiatric facility affiliated with Harvard University, for the same treatment. And she could be admitted within four days. But there was no guarantee that a month would be enough time.

“Dialectical behaviour therapy is as important as air to me,” the 20-year-old wrote in her journal during her stay.

After her first month at McLean, parents and doctors decided Menu Courey would benefit from additional therapy. So the family signed up for a second month, but moved her to a day program due to the prohibitive cost.

Menu Courey continued to make progress, but doctors said she needed another six months of treatment.

The family couldn’t afford it, so they lined up a psychologist in Toronto in the private sector who’d give her the outpatienttherapy she needed in Toronto. But Menu Courey couldn’t fathom the idea of leaving the hospital.

Three days before she was discharged, Menu Courey swallowed 100 headache pills.

She died two days later.

People with borderline personality disorder have trouble regulating their emotions.

And there is a dearth of resources for those living with the disorder.

“CAMH recognizes that specialized treatment resources for people with borderline personality disorder are scarce,” said Shelley McMain, head of the borderline personality clinic at the Centre for Addiction and Mental Health. “This is a problem that exists not only in Canada but is a concern realized internationally.”

Because of that, many patients wait up to a year before being admitted to the clinic’s year-long program with dialectical behavior therapy.

Menu Courey’s parents want to see the therapy more widely available.

They have a point.

Borderline personality disorder is as common as schizophrenia — both affect about 1 in 100 adults — yet there are significantly fewer resources available for patients living with the disorder.

“There is no data at all that medication helps at all,” Aguirre said.

And the therapy has proven effective in the most serious cases. About 10 per cent of people living with borderline personality disorder in Canada and the U.S. commit suicide. At Aguirre’s clinic, which has treated 450 people. Only two have killed themselves. Menu Courey was one of them.

Menu Courey, a swimmer on full scholarship at the University of Missouri, would lose her temper if someone was late.

Her parents described their daughter’s series of thoughts during a breakdown, which her doctor said is typical of those with the disorder:You don’t respect me, she thought. This is a terrible day. No one respects me. No one loves me. This is the worst day of my life.

Anything could set her off, and it did, dozens of times a day.

How to respond to those emotional outbursts is at the heart of the therapy she was receiving — skills her parents learned as part of their daughter’s program in Boston.

“The problem is if you tell someone with borderline personality disorder that yelling at your mother isn’t wise because you’ll never get what you want,” said Blaise Aguirre, her psychiatrist at McLean Hospital. “That will actually make someone worse and create more suicide attempts.”

The therapy calls for one part acceptance, and one part behavioural change.

“So, you say to her, ‘It’s really awful your mother didn’t show up on time and you feel angry, but what are we going to do next time in anticipation that there might be traffic and knowing that is one of the patterns. Back to acceptance, we know you get upset about it and that really sucks, but you don’t want to live that way.”

So the patient feels heard through acceptance and behavioural change comes from learning a wide range of skills, working on emotional hot spots as homework, to learn how to deal with their emotional shifts in a rigourous, almost scientific approach.

“Borderline personality is a frustrating illness,” Aguirre said. “It’s like the leprosy of psychiatry. It’s the disorder that few people want to treat.”

“Right now, borderline personality disorder is a disease for the rich,” Courey said, choking up. “I’ve never felt so poor in my life. But it doesn’t have to be this way.”

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